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persistent pulmonary hypertension of the newborn


Our Arkansas Adventures: Part Four

March 13, 2017

We’re in the home-stretch here as I fully intend for this to be our final post about our time in Arkansas…which means it could be a little longer than previous posts, since it covers several weeks of time.

No hating allowed! ūüėČ

Let’s pickup where we left off – Christmas Eve. It was a super rough day because we saw Charlotte regress after having such a rapid turnaround. My parents (who’ve never spent even one Christmas away from Omaha) drove down to be with us in Arkansas. It meant a whole lot to us.

Within an hour of Charlotte arriving at Children’s, they successfully got a PICC line in her leg. WHEWWWWW! They also took some blood gasses and they were starting to look good again, so they began to wean the oxygen down. It was now a waiting game as she received a four-day course of steroids to shrink any swelling in her airways before she’d be ready to come off the ventilator again.

There was always the possibility that it wasn’t actually swelling and there was an obstruction in her airway (like a growth or something) but we’d wait to see if she failed extubation again before getting an ENT evaluation to check for anything abnormal anatomically.

We sang Christmas songs at Charlotte’s bedside that evening. It was so peaceful and we could finally relax because she was doing well again.

Christmas morning was bittersweet because Charlotte wasn’t with us but the family we were staying with really made it special for us. They had a few gifts for our family, which JoJo especially enjoyed since opening presents is a favorite activity of hers.

Jonathan and I had left all our Christmas presents for Josie in Omaha so a quick run to Target and a few Melissa and Doug toys later, we had plenty for her to open. I’d forgotten to buy Jonathan anything until a couple days before Christmas and after assessing his Amazon Wishlist,¬†only one of the items would actually be able to make it to the house before Christmas. It was a nose-hair trimmer so that’s all I gave him. LOL

That afternoon we went back to the hospital and opened some gifts at Charlotte’s bedside. My heart broke as we left when I saw another baby’s bedside surrounded by dozens of loved ones. The hospital has a strict policy of two visitors at a time unless it’s critical enough to invite family back to say goodbyes. We had to walk past them as they wept on one another’s shoulders. My heart shattered for them. The NICU is a place where you realize as a parent how precious and fragile life is and that none of us¬†are in control. All we can do is trust God with the lives of our kids and do our best to protect them in ways we can.

The day after Christmas they ended up losing Charlotte’s arterial line. This was allowing them to take blood from her artery so they could measure her blood gasses but they could poke her heel to test, just wasn’t as easy or fun for her. This meant that I could FINALLY HOLD HER!!! It was just perfect. Jonathan also got to hold her the next morning.

On December 28th, after all the steroids were given, it was time to try taking her off the ventilator again. It’s funny since I absolutely wanted this to happen but I was also super scared it would end up like last time. In the NICU it’s easy to get used to where your kid is at and if they’re stable you don’t want to mess with it. Even good steps can be scary because it always poses a risk of stable becoming unstable. I was at her bedside when they took her tube out and she did amazingly. I even heard her CRY!!!!!! That’s when I was certain the steroids worked and it was swelling and not an obstruction preventing her from breathing. She hadn’t cried the last time because she couldn’t get the sound out so this was quite the improvement.

Gazing at me in first few hours off the vent! Lovin those TMNT socks they put on her hands to prevent scratching!

BUT THEN JoJo, Jon, and I all got struck with the flu!!!!!! Nooooooooooo!!!! This meant that we couldn’t get into the NICU (because hello, sick babies). Thank the Lord that my mom was in town (she stayed while my dad went back to Nebraska for work). She moved into the hospital for the next several days while we took every conventional and homeopathic remedy available to get the flu gone fast.

Of course the day Jonathan finally got better, he had to fly down to San Antonio, TX to attend SEEK 2017. I was also coming out of the woods so I ventured back into the NICU but made sure to wash and sanitize myself every few minutes! Since Jonathan was gone, my mom stayed at the house with Josie and took care of her all day while I stayed with Charlotte.

The house we’d been staying at, while awesome, was 25-30 minutes from the hospital. You can only imagine how much we spent in gas money that month doing several roundtrips each day! I got a call saying they had a spot at the brand new Ronald McDonald House across the street from Children’s. It was gorgeous. The rooms were like a hotel. The living rooms were so comfy and the dinning room/kitchen had a giant glass enclosed playroom off of it where kiddos could play. Oh and they also had a Golden Doodle named Mac that Josie became OBSESSED with. We were so grateful a spot there opened up so I could walk to the hospital but also have access to a kitchen during the day to cook meals. The families we met there were also invaluable as we all got to lean on one another while undergoing some of the hardest chapters of our parenting journeys.

Charlotte’s big task after getting off the vent and oxygenation well was learning how to feed. They predicted she’d have trouble for several reasons. She had a lot of choking going on so we literally had to take it one feeding at a time. We’d offer her bottle and then whatever she didn’t finish in a 20 minute window, she’d get through her NG Tube. With almost every feed she’d do better than the last, which was encouraging since her first feed she only took 9ml…so I thought it would be forever before she’d be able to take the 75-90ml at a feed a baby her size would typically take. We were even told sometimes the feeding issues would take longer to overcome than the initial respiratory! EEP!

It took her a little over a week before she decided to suck down an entire bottle but once she gone and done it, the girl never looked back. She was slamming the bottle consistently so it was suddenly time for us to move into a live-in room to take over her care completely before discharging. I packed up our van with ALLLLLLL the things we’d accumulated in Arkansas and sent my mom and Josie home, knowing we’d only be a few days behind them.

Jonathan flew back to Little Rock on Saturday January 7th right as the Docs said that if by 9am the next morning she’d continued taking her feeds, we would be discharged immediately. Just in time!!

We could hardly believe it was happening so fast. It’s as if she decided she was done with the hospital and it was time to get home! Fine by us, Charlie! ūüôā On January 9th we were discharged from the hospital. We took that last night in Arkansas to visit with her birth family one more time since it’ll be a little while before we make a trip back down South.

The next morning we hit the road to beat Winter Storm Jupiter (which ended up not being as big a deal in Nebraska as they thought it would be!) Charlotte did great on the trip and it was soooo very good to get home and start the settling in process.

It’s funny because while we were in Arkansas for six weeks, it felt like we were never going to leave¬†and we couldn’t imagine life beyond the hospital walls. Here we are, two months since we were discharged, and its starting to feel like a bad dream. It’s getting hazy. It’s harder to recall the horrendously negative emotions I all too often experienced. And when I look at Charlotte, I can’t picture her face with tubes anymore unless I look at a picture.

We’re humbled and grateful we got to see Charlie completely heal and come home. We’re filled with thanksgiving when we think of ALL THE PRAYERS that were lifted up on her, ours, and her birth family’s behalf. We praise God for seeing her through this rocky road and restoring her. Thanks again to everyone who walked this road with us. We couldn’t have done it without you.


Our Arkansas Adventure: Part Three

March 2, 2017

We’re picking back up on our time in Arkansas for Charlotte’s birth. In case you’ve missed parts one and two, catch up! Many apologies for leaving y’all hanging for the last couple of weeks. We’ve had some major behind the scenes work to do with our financial beta class and it’s kept us juuuuuuuust a little¬†busy. That and a couple little people who like to have our attention from time to time. ūüėČ

Alright so let’s jump back to December.

After that first full day in the NICU, it’s hard to¬†put into words everything that happened over the next¬†week and a half.¬†The first several days were obviously the scariest and emotional for us, our families, friends, and Charlotte’s birth family. To say there were ups and downs is¬†quite the understatement.

Not only were we completely uncertain as to Charlotte’s prognosis, we were also living in a city where we virtually knew nobody, it was almost Christmas, and Jonathan didn’t take any time off work due to some big projects with hard deadlines.¬†All those factors combined left us suspended in this hazy, weird, and stress-filled vortex.

Jonathan and I didn’t want JoJo to ever wake up without a parent’s face to see first thing yet we weren’t willing to leave Charlotte alone in the NICU so we began¬†to tag team living at the hospital.

I stopped taking care of myself the day Charlotte got sick. After it was obvious¬†that I wasn’t eating (didn’t even know I wasn’t) Jonathan and the family we were staying with brought me groceries¬†and friends started to send gift cards. Even with that, I still lost close to 10 pounds that first week because all I can eat (thanks autoimmune disease) is meat, fruit, and veggies and you need to eat a lot of those to maintain weight and I was eating like a bird.

Around this time there were also TONS of ups and downs with Charlie. Her blood gasses would look great so they’d wean her oxygen a little bit. Then they’d hit a wall and her gasses were poor so they’d bump her back up… sometimes all the way to 100% oxygen (aka starting over from scratch) and we’d have to begin the weaning process again. It was a two-steps-forward and one-step-back situation for sure.

Almost daily they’d have to add some new medication until Charlotte had like 10 tubes sticking out of her little body for all sorts of purposes. It was so hard to see her constantly sedated but I knew she needed the best that modern medicine could offer and that’s exactly what she was getting.

The days ran together and it’s remarkable that even now I can barely remember a full day.

Jonathan had to keep working so he would sit at Charlotte’s bedside working all hours of the day and night until we swapped out and it was his turn to be with Josie. When I was at the hospital, I talked to Charlie and loved on and prayed over her as best I could, but she was sedated and we were told to minimize stimulation altogether. It left me with a lot of time on my hands. I could have been working on big projects for our upcoming business venture but mentally all I had the capacity for was texting, decorating her room for Christmas, Facebooking, scrolling Amazon and watching Fuller House.

In the midst of this we finalized Charlotte’s adoption in court on December 20th, 2016. While we were certainly over the moon¬†to call her our daughter officially, it was still a somber occasion for many reasons. Charlotte wasn’t with us as JoJo had been for her finalization. We hadn’t even held her at that point, seen her face without tubes, or seen her awake. A very surreal experience indeed.

Adoption (at least for us as parents) is one of those double edged swords – incredible joy for the beautiful soul joining our family but sadness for Charlotte not being able to be raised by her¬†birth family and sadness for her birth family because we could see the unspeakable pain this decision brought them. Sure we could just do what some adoptive families have done and completely blow off and not care about our children’s birth families… but that’s not us. We care about them like family….because they are. We aren’t replacing them. We don’t desire to cut them out. They aren’t problems to be swept under rugs. When they hurt – we hurt. And joyful occasions such as a finalization can get mixed with sadness for them and our daughter’s loss and that’s OK.

A little over a week after birth, Charlie successfully weaned her oxygen down to room air (21%) and completely weaned off Nitric Oxide. Woot!!! So it was time to take her off the ventilator. They also took her umbilical line out per protocol to decrease chance of infection but we weren’t too concerned about that since she wasn’t going to need her line for sedation anymore once the ventilator was out and she was breathing on her own.

I’d been at the house with Josie the morning they wanted to take her off the vent and when I heard it was happening that morning, I sprinted to get ready and head into the hospital. I remember seeing Charlie’s doctor in the hallway and she said, “My Christmas gift for you is to hold your baby girl!” I was excited, emotional, nervous, and stressed.

I ran to Charlie’s room and the vent was gone!

She was breathing on her own with the help of a nasal C-PAP. About 15 minutes went by (all the while I am in disbelief that she had this sudden turnaround in the last 24 hours and feeling like it was too good to be true) and she opened her eyes. These beautiful eyes locked with mine and we had a very peaceful couple of minutes looking at one another.

But then I could tell something was off. She started to get agitated. She was arching her back trying to breathe. Her chest started retracting (caving in upon taking a breath). I looked up at the monitor and her blood oxygen levels were falling. I ran to get help and the room crowded with doctors, nurses, and respiratory therapist staff. It was obvious she needed re-intubation because her airways were too swollen and she couldn’t get air to pass through them. I crumbled onto the nearby couch and just cried silently as they brought out the supplies to hook her back up to the vent.

Holding her on Christmas was officially out.

They needed to give her a course of steroids to shrink whatever swelling was likely present from her first traumatic intubation over a week prior. But in order to do that, they needed IV access, which is tricky in newborns as IV lines don’t hold long in babies. We were told it’s great if you only have to change the line daily because sometimes their tiny little veins can only hold a line for a shift! Her steroids needed to be given through her IV as well as her continuous sedation since she was on the vent…so the ideal line would be a PICC line but they’d just taken hers out.

It was now a race against the clock to get a PICC line. She had an IV in her foot¬†at that point but it had taken several attempts to even get that. Over the course of about 12 hours they tried to get a PICC line a half a dozen times and they couldn’t get it. They even had to shave her head to attempt one but no luck. I didn’t know they’d done this until I walked into her room and saw her hair gone…and I immediately started just bawling because I wasn’t present for my baby’s first haircut.

UAMS staff weren’t hesitant to say we’d reached the limit on their scope of care and that Charlie needed to be transferred to Children’s Hospital in Little Rock to get a PICC line, as they had more technology to help them get one in.

All the while they were still measuring Charlotte’s blood gasses since she had her failed extubation incident and they were getting worse and worse with each draw. She was regressing. They had to bump her way back up to 100% oxygen again and the called the Children’s Angel Flight¬†staff¬†to bring an ambulance over for her transport.

The team arrived around 2:30pm and it took almost an hour to get her ready to get in the ambulance. At one point I almost fell over and forgot I hadn’t eaten that day so Jonathan got in his car to go grab Chipotle and Starbucks (it was gonna be a long night!) and meet me at Children’s Hospital so I could eat while they settled Charlotte into her new bed. It actually turned into quite the funny and heart-warming story:

It was Christmas Eve and I remember thinking the next 24 hours will either make Christmas a wonderful day or a very sad day in our family over the years to come.


Our Arkansas Adventure: Part Two

February 15, 2017

In typical fashion I left last post with a cliffhanger. I don’t feel like there’s been enough drama or suspense in our world right now, so just trying to supply some. ūüėČ


Our story picks back up on December 14, 2016, the day of our dear Charlie’s birth.

As the birth family got all checked into their room, we hung out in the lobby, trying to figure out where we were supposed to be when the baby was born. Charlotte was coming via c-section and neither Jonathan or I would be present in the room. Navigating how the baby would get to our room was proving difficult for the hospital social worker and staff.

One nurse in particular earned the nickname Nurse Ratched because she just had this horrific attitude towards us. Obviously Jonathan, myself, and the agency were being nothing but kind and cooperative as we tried figuring out where we were supposed to be. This nurse was just unbelievably rude towards us…me in particular.

That’s when I realized it was because this was an adoption. There are certain people in healthcare that treat adoptive moms like some psychopath woman from a Lifetime movie…like I was sneaking around the Labor and Delivery floor waiting to snatch a baby and make a break for it. I’ve had friends talk about this with their past adoptions but I hadn’t come up against it until Nurse Ratched. She and I will cross paths again here in a few minutes and it ain’t gonna be pretty.

We finally (after 2+ hours of wandering hospital, calling social workers, talking to nurses, etc.) figured out that we were supposed to wait in a room and that Charlotte would be brought directly to our room after birth to the warming table to get weight and vitals. Whew.

It’s now after 1pm and Miss Josie is one feisty, stubborn girl when she’s NOT tired but she had reached full blown tantrum mode at this point. We knew Charlie would be born any moment so we white-knuckled through thinking we would meet Charlie, snap a video of Josie meeting her sister, and then Jonathan would go drive around Little Rock while Jo napped in the car and I snuggled Charlie.

The door busted open and in walked the doctor carrying Charlotte and a few nurses. They took her to the warming table and clearly were trying to encourage her to cry. At this point Jonathan¬†was excitedly taking video footage of everything. Since I am a nurse, I knew straight away that something wasn’t right. I told Jonathan to put the camera away. (BTW we still haven’t watched that footage. I can’t come to do it quite yet.)

After a minute or so Charlie let out a cry but it sounded like she was drowning. We never heard another cry again. Her oxygen sats were dropping and at this point were in the 70’s and falling. The team working on her said they needed to take her to another room to evaluate her/apply C-PAP to try and get her oxygenating better.

Everyone was saying, “Oh this is no big deal, she’ll perk right up.” It’s not that uncommon for c-section babies to have a little trouble breathing after birth since they didn’t get the fluid pushed outta them on delivery. This wasn’t that though and I knew¬†they were just trying to stop us from worrying. In my gut I knew something was seriously wrong.

At this point Josie was like a nuclear war head. Screaming, thrashing, tantrums on a level we’d never seen. We decided that Jonathan should still take her on the drive so she could nap and that I would stay and wait for news about Charlotte. It was an impossible decision but we had no other options because hello, living in a state where we don’t know really anyone.

After a 15 or so minutes of sitting in the room with the social worker from the agency, I began to get restless. Why hadn’t they returned to update me? What’s happening to my baby? I peeked my head out of the room and Nurse Ratched was there. She told me to “SHUT THAT DOOR AND DON’T COME OUT UNTIL WE GET YOU!”


Would she have spoken to the birth mother that way? No. It was crystal clear I wasn’t a real mom in her eyes. I know legally at that moment I wasn’t but the birth mom chose us and I knew that she’d want me to be with Charlotte since she couldn’t while she recovered¬†from a c-section. I was in shock so I just shut the door. I went over to the hospital bed and started crying as I texted family about what was going on.

A few more minutes passed and I just decided that no was not an answer I would accept – I needed to be with Charlie. So I went back into the hallway and the Charge Nurse was there. I went into a big speech about how I would gown up and stand in a corner but by golly I was going to be in the room with my daughter.

I was crying¬†and must have looked like the most desperate person she’d ever encountered.

“Follow me” she said.

I arrived in the room where they had Charlotte and my heart sank because there were about a dozen doctors, nurses, and respiratory staff working on her. Obviously it was far worse than they originally thought. They were getting ready to intubate Charlotte and were sedating her through the umbilical line she had in place. Her oxygen sats never picked up with the C-PAP or anything else they’d tried and she needed oxygen so going on a ventilator was the next step.

They loaded her into an incubator with a ventilator running so she could transfer to the NICU. I grabbed all our bags and followed while I called Jonathan, updating him of the situation.

JoJo was still asleep in the car but I needed Jonathan at the hospital with me. Things had gotten too serious. We called the family we were staying with and asked if they’d be willing to take Josie for the afternoon/evening. They said absolutely which was such a gift. They were literally the ONLY PEOPLE WE KNEW in Arkansas. We were so grateful we hadn’t chosen to stay at a hotel at this point because it wouldn’t have allowed us to be at the hospital together without Josie at a time we needed to be.

Jonathan returned to UAMS (University of Arkansas Medical Sciences) NICU that evening. We both had more questions than answers but a diagnoses finally came: Persistent Pulmonary Hypertension of the Newborn. Her doctor sat us down and explained that the first 72 hours would be the rockiest and that hopefully she’d begin responding to medications and make a turn for the better. She told us we’d be in Arkansas for a long time. She told us that this disease was very serious and can be life-threatening (later Googled…first and only time I mistakenly Googled her disease….that as recent as 2000 40% of children with this diagnoses didn’t make it). She told us they’d do everything they could to stay in front of it and that they’d work their way down the treatment options available.

We sat on the couch, dear in the headlights, processing everything that was happening.

The agency social worker remained by our sides which was a huge source of support. I remembered how nervous I was before Charlotte’s birth, wondering if we’d bond right away. Recalling that now makes me laugh because I was so bonded to her and she’d only been on the outside world for a few hours. Instead of her illness making us hesitate about the adoption it drew us closer to her. I became Momma Bear the moment I saw her. We were forever in love with¬†Charlie no matter what played out over the days and weeks ahead.

By the end of her first day of life she had¬†tubes coming outta everywhere. She had several IV medications running. They tried Surfactant on her lungs and it didn’t work and were gearing up to start Nitric Oxide to help her lung alveoli relax and oxygenate well. We prayed over Charlotte for a while and eventually pulled out the couch and chair beds in Charlie’s NICU room somewhere in the wee hours of the morning. It was time to get some rest (which I laugh about now because seriously who can rest when their kid is in a life-threatening state AND there are constant monitors beeping and people coming in and out of the room).

Before she was born we were told that Charlotte would be discharged to go home from the hospital 24 hours after birth so Jon and I didn’t think to pack extra clothes. Heck, we’d only even packed Newborn clothes for Charlie and she was born at 10 pounds so those weren’t ever going to fit! We were totally unprepared but trusted the Lord would provide. As I drifted off the sleep (for multiple 15 minute increments LOL) I remember feeling overwhelmed by all the unknowns ahead but totally confident that God would take care of Charlotte, her birth family, and us.

I also knew it was going to be rough waters but that we wouldn’t be alone in the storm. That Oceans Song I referenced in our last post (the one that’s all about stepping out into the water like Peter the Apostle did when Jesus asked him to) was becoming a reality in our lives. Jesus essentially set fire to our boat out at sea and it was going down. He was inviting us to step out of the sinking ship in faith in a way we’d never done before.

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

OK, Lord. We stepped. The rest is all up to You.